Charlotte Figi, 6, has Dravet Syndrome, a rare, severe form of epilepsy
Doctors tried everything they could think of to get her daily seizures to stop
The family decided to try a special type of medical marijuana low in THC
Her parents say Charlotte is now thriving and seizures have been reduced to one a day
Is marijuana bad, or could it be good for some? CNN chief medical correspondent Dr. Sanjay Gupta spent a year traveling around the world to shed light on the debate. Catch his groundbreaking documentary “WEED” at 8 p.m. ET August 11 on CNN.
By most standards Matt and Paige Figi were living the American dream. They met at Colorado State University, where they shared a love of the outdoors. After getting married, the couple bought a house and planned to travel the world.
They did travel, but their plans changed when their first child was born in 2004.
Max was 2 when they decided to have another child. The couple got the surprise of their lives when an ultrasound revealed not one but two babies. Charlotte and Chase were born October 18, 2006.
“They were born at 40 weeks. … Charlotte weighed 7 pounds, 12 ounces,” Paige said. “They were healthy. Everything was normal.”
Seizures and hospital stays begin
The twins were 3 months old when the Figis’ lives changed forever.
Charlotte had just had a bath, and Matt was putting on her diaper.
“She was laying on her back on the floor,” he said, “and her eyes just started flickering.”
The seizure lasted about 30 minutes. Her parents rushed her to the hospital.
“They weren’t calling it epilepsy,” Paige said. “We just thought it was one random seizure. They did a million-dollar work-up – the MRI, EEG, spinal tap – they did the whole work-up and found nothing. And sent us home.”
A week later, Charlotte had another seizure. This one was longer, and it was only the beginning. Over the next few months, Charlotte – affectionately called Charlie – had frequent seizures lasting two to four hours, and she was hospitalized repeatedly.
Doctors were stumped. Her blood tests were normal. Her scans were all normal.
“They said it’s probably going to go away,” Paige recalled. “It is unusual in that it’s so severe, but it’s probably something she’ll grow out of.”
But she didn’t grow out of it. The seizures continued. The hospital stays got longer. One of the doctors treating Charlotte thought there were three possible diagnoses.
The worse-case scenario? Dravet Syndrome, also known as myoclonic epilepsy of infancy or SMEI.
Dravet Syndrome is a rare, severe form of intractable epilepsy. Intractable means the seizures are not controlled by medication. The first seizures with Dravet Syndrome usually start before the age of 1. In the second year, other seizures take hold: myoclonus, or involuntary, muscle spasms and status epilepticus, seizures that last more than 30 minutes or come in clusters, one after the other.
At that time, the Figis said, Charlotte was still developing normally, talking and walking the same day as her twin. But the seizures continued to get worse. The medications were also taking a toll. She was on seven drugs – some of them heavy-duty, addictive ones such as barbiturates and benzodiazepines. They’d work for a while, but the seizures always came back with a vengeance.
“At 2, she really started to decline cognitively,” Paige said. “Whether it was the medicines or the seizures, it was happening, it was obvious. And she was slipping away.”
When Charlotte was 2½, the Figis decided to take her to Children’s Hospital Colorado. A neurologist tested her for the SCN1A gene mutation, which is common in 80% of Dravet Syndrome cases. After two months, the test came back positive.
“I remember to this day it was a relief,” Paige said. “Even though it was the worst-case scenario, I felt relief just to know.”
Matt, a Green Beret, decided to leave the military.
“Every mission, every training I was going to do I was called home because she was in the pediatric ICU again or in the hospital again.”
They were quickly running out of options. They considered a drug from France. Doctors suggested an experimental anti-seizure drug being used on dogs.
Paige took her daughter to Chicago to see a Dravet specialist, who put the child on a ketogenic diet frequently used to treat epilepsy that’s high in fat and low in carbohydrates. The special diet forces the body to make extra ketones, natural chemicals that suppress seizures. It’s mainly recommended for epileptic patients who don’t respond to treatment.
The diet helped control Charlotte’s seizures but had a lot of side effects. She suffered from bone loss. Her immune system plummeted. And new behavioral problems started popping up.
“At one point she was outside eating pine cones and stuff, all kinds of different things,” Matt said. “As a parent you have to say, let’s take a step back and look at this. Is this truly beneficial treatment because of these other things?”
Two years into the diet, the seizures came back.
The end of the rope
In November 2000, Colorado voters approved Amendment 20, which required the state to set up a medical marijuana registry program.